throat infections and colds with sjorgens

[cloverboots]

ENT diagnosed my sjorgens and advised my GP to have me referred and treated quickly , 15 months later still waiting for rhumatology what a joke .Have had it about 15 years I think , was treated for gastric reflux for many years Do others have such a aweful time with colds and sore throats .Choking on phlem and wheezing really frightening .GPs have no sympathy .I dred the winter months .Cathy

[Nanainthegarden]

I do feel for you, it must be awful with symptoms such as you describe. Sjogren’s affects my eyes and mouth and that’s bad enough.

I do wonder , if your symptoms do not affect your eyes/mouth, if you have something else going on? Why did ENT diagnose Sjogren’s?

Sending a virtual hug!

[cloverboots in reply to Nanainthegarden]

Sorry for taking so long to replie .I had to pay for ENT in the end because it was a 2 and a half year wait on the NHS .I went because besides the mouth and throat being dry my nasal passages were very dry as well .I also have dry eyes. It was not a good experience , he spent less than 2 minutes with the scope down my nose and said he was sure it was sjorgens , asked me to pay on a hand held card payment machine .I was quite literally bundled out of the door , he did not want to discuss anything .Last week after 14 months of waiting I saw a Rhumatologist .He sent me for 16 blood tests and I have got to have a lip biopsy , mri of thorax and chest xray .Not looking foreward to lip biopsy but after over 15 years of all these symptoms I just want to know what is wrong with me , which it seems people just want without all the waiting .Did you get a diagnosis with a lip biopsy ? Thank you for the virtual hug .Cathy

[Nanainthegarden in reply to cloverboots]

There are not enough rheumatologists around that’s why there is a long wait for an initial appointment as well as the usual NHS inadequacies.

No, I didn’t have a lip biopsy, I don’t make any tears at all so was diagnosed by the hospital ophthalmologist and my rheumatologist agreed.

You seem to be moving forward now so hope it gets sorted soon,

[OldTed60 in reply to cloverboots]

I was diagnosed by lip biopsy in 2016 having previously been misdiagnosed with RA. My ANA was positive but not my more specific immunology at that point.

I do tend to get colds and other viruses very badly although my immune system is inherently overactive so I don’t get them as frequently. I’m now immune-suppressed so I have to be very careful.

Sjogren’s is very underestimated by the medical community at large - who tend to see it as just a real nuisance rather than a serious autoimmune disease. I now have Systemic Sclerosis with a positive antibody and this is taken far more seriously by rheumatologists so I’m maximally treated. But it’s the Sjogren’s that impacts as much, if not more, on my quality of life. And ironically immunesuppression helps the Sjogren’s symptoms more than it helps my Scleroderma

[Pippydo]

I’ve had Sjorgrens for many years but about 4 years ago found it had affected my lungs with a confirmed diagnosis of LIP, so I now have another worry, might be worth asking for lung function tests hopefully rheumatology appointment will come through very soon. All the best to you.

[weathervane]

I had the same problems for years before I had official diagnosis, I gargle with salty water and use sterimar saline nasal spray to help some of the issues. I hope you get an appointment soon with rheumatologist so you know for definite what you are dealing with , they will do bloods and possibly a lip biopsy.

[cloverboots in reply to weathervane]

Sorry it took me a while to reply , saw Rhumatologist at last , having lung function tests etc and lip biopsy .The sterimsr spray is really good .Did you have a lip biopsy ?Thanks for your advice

Cathy

[weathervane]

Glad to hear you have seen rheumatologist and that sterimar is helping. I didn’t need to have a lip biopsy as my blood were positive for Sjögren’s. I hope all the tests and biopsy go well for you , take care x

[PURPLECROCUS3]

rheumatology are a joke.My gp referred m e in 2021 only to be declined.they referred to scans from 2022 and before -disregarding anything from 2022 onwards.